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The Conversation Nobody Wants To Have -- But Should

04/08/2015 07:13 am ET | Updated Jun 08, 2015

It's been over a year since my father's death. In that time, I've struggled to remember him as a well person. He was healthy for my first 45 years of life and yet, hard as I try, I cannot reimagine him as whole. So dramatic was the scenery of his decline, it infected the memories that were amassed underneath.

His was not a romance-movie passing. In fact, my father was not even present in the room. Nine years of dementia had consumed him almost completely. What remained at the end was a healthy physical body. A heart that continued to thud. Eyes that blinked. Warm skin. His lungs swelled and deflated, rhythmic as a respirator. To me, that body had no connection to a father who yelled loud, laughed hard and cried well.

My father suffered from Lewy body dementia. Unlike Robin Williams, who had this same disease, my father did not opt out. A physician who knew what his future beheld, my father left no instruction and no guidance as to what he wanted us to do for him. He was diabetic and dementia toyed with his chemistry like a kid with a yo-yo. There were hospitalizations, resuscitations, treatments and procedures -- all transacted without his knowledge or permission. "What would Dad have wanted us to do," I repeatedly asked my mother. Every time, her answer was the same. "I don't know," she'd say.

I am not afraid to die. But I am afraid to live on as my father did. So far, I've made a living will, filed an advanced medical directive with my physician's office and informed my husband and children how to care for me if I'm mentally incapacitated. Next, I am going to make a videotaped directive where I'll speak into a videocam, as fully as I can, the terms of my own life and death. But will that be enough?

"If my mind begins to degrade," I tell my husband, "start thinking about the exit strategy." We have opt-out plans, my husband and I. We joke about them, we revise them, we toss them back and forth like a game of hot potato. But we are quite serious.

I do not want to live without my mind. I do not want my children to accept my physical form as me, as a viable member of their families and a partner in their lives. To me, that would be like a herpetologist caring for a length of molted skin after the snake has slithered away hoping it will one day return.

More importantly, I do not want my family to sacrifice their own lives to keep me. To keep me medicated, supervised, toileted and fed. If my mind is gone, I am gone. No amount of money or attention will bring me back. Trust me on this. Better to use those hours to read or play bridge. Spend the money on a vacation or a nice dinner or a gift.

When our dog was dying, the veterinarian told us exactly what to expect, how much money to set aside, what procedures and eventualities were ahead. At the end, we were heartbroken yet we were also satisfied we'd done the very best for our beloved pet. He died without pain, gently falling asleep as we sat on the floor alongside him. "Why can't we die like that?" My husband asks. A good question, really.

The Sunday NY Times (March 31) published an article on teens who, when faced with certain death, dictated how they wanted to be treated, honored, celebrated and remembered during the process of dying. The adults cringed; the teens planned.

We make plans for everything. Dinner plans, vacation plans, diet plans, weekend plans. We have retirement plans and health plans. We have lists and notes and calendars and reminders to facilitate our plans. There is only one plan missing from all this. The opt-out plan.

I have one.

Earlier on Huff/Post50:

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